Some of you may know that ever since mid-August, I have been trying with varying levels of success and failure to oversee the care given to my Mother-In-Law, who is in declining health. On top of working from home full-time, on top of being a wife, on top of being a mother to G and S. I have been able to take this on for B and his older brother because my work thankfully has been flexible in allowing me to do what is needful. That, and I'm the only one who has the PTO to do it. As of yesterday, I have reached my personal breaking point in regards to this. I have screamed and cried my heart out to the point of making myself sick. Twice. In one day. I have slept all of 3 hours in the past 24. The system thinks she is faking a lot of her external symptoms and no longer wants to care for her in a nursing facility setting, like she needs. So they want to move her "home." Which, since we terminated the lease on her apartment, is our home. I am beside myself right now. MIL is truly sick and truly needs 24/7 care. Anyone who interacts with her one-on-one will tell you. Me and B both work to keep a roof over our heads; if one of us were forced to quit working to care for MIL, we would lose our house and become a sy and I cannot bear the thought of G watching her beloved Grandma Ancy waste away in front of her eyes. I have tried to be pragmatic and proactive, but it seems like no matter what I try to do to help MIL, it turns to shit somehow. I spent between 1:15 and 2:30 AM this morning typing up the following document, to help me get some of my frustrations out and my thoughts together for the upcoming care plan meetings and to help appeal the state decision. She has been at 2 different facilities, and there are multiple state-based Agencies involved too, hence the multitude of references to them.
It seems we are at an impasse as to what to do with Nancy. I think we are all in general agreement that her current state is not one of a rehab-type patient. As her family, we feel that we cannot care for her medically in the way that she needs, despite what the PAS agency and Aging and In-Home Services would like; that is to say, using THEIR providers of in-home care so THEY get the state money instead of a long-term facility. Everything seems to root back to the initial assessment carried out at Kingston. In the beginning, we went in on good faith that she would indeed rehabilitate and the dialysis would help her and she would be able to return to independent living. The 90-day admission was approved. As Kingston advised us her 100% Medicare coverage would run out on day 21 of her rehab stay, we made the decision to look for a long-term placement and based on availability, went with Miller’s. We were promised by the staff at Miller’s that “yes, she is considered a long-term care patient here even though she will be staying in the rehab unit.” Based on their verbal assurances, we trusted that this was the case and that the proper paperwork had been filed by the staff that handled such things to switch her with the state from “rehab” status to “long-term care” status, and that Medicaid, once it kicked in, would cover her expenditures, minus her liability after Medicaid was factored in. As we have found out recently from the PAS agency, that is not the case, and needless to say we are distraught. We as the family feel we have been misled and uninformed about all facets of the course of treatment and how the Medicare reimbursements worked. If we had been made fully aware of the ramifications, we can assure everyone that we would not be in the predicament we are now. I know that pleading ignorance is not the greatest of excuses, but we have been flying by the seat of our pants since Nancy first got sick in August and have probably placed more trust than we should have in the people who are in this business. After all, they’re the experts and they’re the ones who not only need to take care of Nancy but us as well to make sure we are kept up to date on the Medicare billing and reimbursement process. Miller’s claims they always had someone from the business office or MDS in the care plan meetings I attended; THEY DID NOT!! The typical attendees were Social Services, Nursing, Dietary, and OT/PT. To my knowledge, there was never anyone from General Administration or the Business Office in attendance. I never spoke to anyone in the business office until 11/10, when the second Medicaid application was submitted. The first one we did in August was denied because I was unable to get all of the income verifications before the submission deadline, and was advised to refile when I had everything.
Unfortunately, the most recent PAS report, which was filed 11/14, now states that Nancy is no longer considered a reasonable candidate for nursing home placement and is recommending that she be returned to her family, to live with us while receiving the “cost-saving benefit” of in-home services. From what was relayed to me by the person that did her assessment, Nancy was upset at the visit and did not allow the assessor to speak with her. Instead, the assessor went to look at her chart and spoke to a couple of staff members, who told her that she had been refusing her PT and had refused to go to dialysis one time. Based on this assessment, the PAS report states what it does. As the family, our concern is that this assessment was unannounced, and that neither Aging and In-Home, nor the nursing home staff, alerted us to when the assessor would be there. We could have defused the situation and at least allowed the assessor to get a more accurate picture of Nancy’s current state of health. We feel that she needs 24/7 custodial care in a nursing facility because she simply cannot take care of herself anymore, and we cannot take her in because we cannot give her the proper care she requires and perform the duties that nursing staffs are trained to do. WHAT DO WE HAVE TO DO, OR HAVE DONE, TO GET HER TO BE ADMITTED TO ANY FACILITY AS A PERMANENT PLACEMENT/CUSTODIAL CARE PATIENT? WHAT NEEDS TO OCCUR FOR HER TO GO FROM “REHAB” PATIENT TO “LONG-TERM CARE” PATIENT? No one seems to know or they don’t want to give us an answer.
Because of our lack of understanding about the Medicare reimbursements on the PT, and the fact that we had verbal assurances that she was not a rehab patient, we no longer felt she was getting benefit from PT and spoke to the head of the PT/OT department and asked for it to be discontinued, as it was clear that Nancy was not faring well between it and the dialysis. If the PT/OT staff had taken the time to proactively call the family and explain to us that Medicare would no longer cover Nancy if she stopped it, rather than wait for the family to call and inquire about why Nancy felt pressured and intimidated by the staff and forced to do it, again, things would be a lot different now.
We are also tired of hearing reports that Nancy is “faking” certain symptoms for attention or sympathy or what-have-you depending on the time of day. She is tired of trying to convince you otherwise, and quite frankly so are we. It’s insulting and degrading to her and is detracting from the level of care she is getting. Yes, we are aware Nancy is prone to dramatics. Yes, we know there are psychiatric issues exacerbating things. But we are taking steps to further investigate her issues with tremors and swallowing and slurring speech. If the neurology evaluation she is scheduled for on 12/11 comes back with nothing, fine, so be it. We can accept that it is all psychiatric/psychosomatic because of the PTSD. But if the evaluation comes back with a diagnosis, we expect that the staff takes it seriously and affords Nancy the dignity she deserves. And by the way, I specifically asked Laurie Barnes to reach out to Dr VanDenDrische on the day we switched Nancy’s in-house physician for a neurology referral, which she promised to get next day. We are STILL waiting to hear about that. I’m glad we contacted her non-facility Primary Care Physician for one.
Since I, as Nancy’s daughter-in-law, happen to have a work situation that is flexible to family needs, I have been primarily overseeing things as best I can, all the while continuing to work full-time and care for a three year old and an infant. I am so tired of hearing things like, “Oh that’s not my area but I’ll find out whose it is”, “Gosh that’s always communicated to us, I don’t know why it wasn’t this time,” and many other clichés that mask the fact that the communication between some or all of the doctors and facilities involved in Nancy’s care has broken down somewhere along the way. I have been doing my best to pick up the slack on this, but I expected to not have to be quite so proactive. I can’t help but wonder if it’s because she does not have private insurance, or is not a private-pay patient. We know Nancy is destitute. We realize that she is going to be dependent on Medicare and Medicaid for her health needs. Why does the medical community feel the need to treat the less fortunate, and their need of government funded programs, like gum on the bottom of one’s shoe?
As time has passed, we as Nancy’s family have watched as one negative health issue, the uncontrolled HTN which had made her chronically ill with flu-like symptoms, was traded for another, worse condition, the end-stage renal disease. The dialysis, having gone on for three months now, is only wearing her down and is not improving her quality of life that we can see. There are also the previously mentioned psych and neuro issues that have been exacerbated. We seek guidance on long-term care and even hospice options for her. Nancy knows she is dying from the renal disease. We didn’t expect her to go downhill so fast; we truly had every intention of seeing her bounce back and return to independent living. We are now confronting quality-of-life issues and, yet again, are learning via the “trial by fire” method. And yet again, we are asking the very system that was set up for people in situations like Nancy for help. And help, for what appears to be an arbitrary reason in our eyes, is not coming. It’s simply no longer acceptable to us.